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Down Syndrome Screening Result

Ladies, can you help please? I got my letter about my Downs Syndrome test results and whilst they say low risk and screen negative, the risk is 1 in 200 which from my reading beforehand (& now!) seems high risk?! I don't understand? Would those of you who may have had the test let me know what your results were and what you think I should do? image

Replies

  • Hi hun,



    I'm 29 and my screening result recently came back at 1:40 so very high risk. It really annoys me that they dont give the result as a percentage because they sound much better, the percentage risk of your baby having a problem is 0.5% which really is very low that means the chances of your baby being fine are 99.5%. We chose to have the amnio (but had decided to keep the baby no matter what). The risk of a miscarriage from an amnio is 1%. I felt like I needed the test because they had planted that seed of doubt in my mind. In your position I wouldn't have the test, your risk of miscarriage is higher than your risk of baby having a problem, that said I would completely understand if you did choose to have further testing because I couldn't cope with the not knowing and the wondering for the remainder of my pregnancy. As it turns out our baby is fine and the amnio came back clear and I'm sure your baby will be too.



    Good luck with what you decide hun, it's not an easy decision. If you want to chat some more or want to know anything about the test then just ask.

    Xxx
  • hi undecided

    the cut off for the nuchal transluency scan and blood test together is 1:150 or higher (eg 1:149, 1:148 etc). so at 1:200 you are low risk.

    If you had the blood test alone, 1:200 or higher is high risk. the nuchal translucency alongside the blood is much more accurare so they are able to stipulate to a higher degree what might be a bigger risk (if this makes sense)

    sounds like you had the scan to be low risk at 1:200.

    I know this might not sound ideal, but think about it from point of view suggested in above post, your chance is only 0.5% and 99.5% that your bubba is healthy. there is double the risk of miscarriage from amnio than of this baby having a problem.

    sometimes screening tests are more trouble than they're worth and they can cause a lot of anguish. anyone can be the 1 in no matter how many, but if i were you id be reassured and if all scans are ok accept your in the lap of the gods on this one and enjoy your pregnancy xx

  • Yeah think that is higher than some, but it comes back as a low risk result because there is a cut off point of 1 hundered and something, I think it may be something like 160 but don't take my word for it. With my first if I remember right I think my risk was 1 in 450 and with my second the risk was higher (but still a low risk result). I'm having my 12 week scan for this pg on monday and will see what it is. Please try not to worry, and like the above poster says, if the result was given sa percentage it would be much clearer. X
  • Thanks ladies.

    I spoke to the specialist midwife yesterday and she was lovely. Explained that whilst I am low risk on the current guidelines, these were only revised last October (I think due to the Budget cuts!!image) Before then anyone who had a result 1:150 - 1:250 were offered extra tests (presumably less than 1:150 were recommended them), so I would have automatically been asked if I wanted the extra tests. Hardly none of the NHS trusts offer the extra 16 weeks tests now though.

    She explained that obviously the only way we can get a 'definite' answer is with the invasive testing, but there is another scan and blood test which can be done at 16 weeks to check/back up the first result.

    Hubby and I don't think we want the risk of the amnio as it's a higher risk that my Downs test result but at the moment I'm not sure I can cope with the uncertainty for the next 6 months?!image

    Anyway, we're booked in for another scan on 21st June and she is going to send me more info about the additional blood test called serum integrated something? She said the problem with the 16 week test is that it is usually only done when someone hasn't had the 12 week test. It is much more sensitive so may now deliver a result of 1:5! (Or 1:5000) I guess we will just deal with that as and when we know.

    I think it's because it is so borderline that I'm worried. Plus my age (31), health etc shouldn't be massive contributory factors so the 1:200 result is purely based upon the 'medical' evidence from bloods and scan result; no statistics involved. 

    Will let you know how I get on xx

  • Good luck, I'm sure everything will be fine xx
  • Quick update ladies; got my test results today and was revised to 1 in 1,400. Much happier with that. My age average is 1 in 800 so this is more reassuring than the 1 in 200 originally. We realise it's still not as great as some people's results but has helped me relax about it a lot.
  • Really pleased for you, that you can relax again and enjoy the rest of your pregnancy! X
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